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Patient Stories

A total of 547 posts are filed under Patient Stories
I’m a Young Mom of 3 and a Guillain-Barré Warrior
I was a normal 26-year-old mother of 3, in perfect shape and health. Well, maybe I had to lose about 10 more pounds from being pregnant the… Continue Reading
5 Things I’ve Learned About Living With a Rare Disease
It has been over 2 years now since my 4 year old son was diagnosed with a rare disease. The first year was spent getting our bearings and… Continue Reading
My 10 year old son won the genetic lottery and today is his day! (A STORY FOR RARE DISEASE DAY)
The Lottery, MegaMillions, Powerball! Everyone dreams of hitting that enormous mega jackpot! Admit it, we have all thought about the… Continue Reading
Video: What Should I Say?
What should you say when you see someone with disabilities? Bo Bigelow says that it’s like how you should treat someone who’s pregnant.… Continue Reading
A Christmas Story
  Caroline Harding decided to throw a Christmas party. She wanted to do it for the many young people, who like her son Columbus, had a rare… Continue Reading
NPR: A Couple’s Quest To Stop A Rare Disease Before It Takes One Of Them
by Rae Ellen Bichell In 2010, Sonia Vallabh watched her mom, Kamni Vallabh, die in a really horrible way. First, her mom’s memory… Continue Reading
Perth Family Confronts Metachromatic Leukodystrophy Diagnosis in Newborn
by Liam Croy A Perth family devastated by a rare genetic disorder has been thrown a lifeline by a world-leading research program in Italy.… Continue Reading
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